A woman has shared the horrifying ordeal she faced after coming off steroid creams to treat her eczema – saying she was left with “oozing elephant skin”.
Andrea Cisneros, a 32-year-old dental hygienist in New York, decided to ditch her prescribed lotions after reading about potentially harmful side effects – but didn’t anticipate just how horrifying the withdrawal process would be, Jam Press reports.
Ms Cisneros was first given the creams when she was just six years old and first decided to ditch them at the end of 2019.
But her skin had become so used to the medicine that within days, she was left with “paper thin, oozing skin”, shedding and immense pain.
One month later, Ms Cisneros was forced to quit her job and became completely housebound while she tried desperately to manage her symptoms.
“Having to give up life as I knew it has been devastating, it has made life meaningless,” Ms Cisneros told NeedToKnow.Online.
“Showers got incredibly painful, my clothes were sticking to my skin due to ooze, and no amount of moisturiser would help my skin.
“My skin started getting progressively worse and days after stopping steroids my skin started to bleed very easily.
“I was very sore, my skin felt extremely thin and I had lots of cuts and wounds throughout my body.
“My skin was shedding like crazy and it was extremely difficult to control my body temperature.
“I cannot remember when I first saw the elephant skin but I definitely remember I had it a few weeks after starting Topical Steroid Withdrawal Syndrome (TSW).
“Elephant skin is extremely wrinkled dry skin as a result of using topical steroids.
“It feels uncomfortable to walk around with very wrinkled and what feels like excess skin.
“Not to mention, the skin is also sore and sometimes open so that adds to the discomfort and also makes it painful and sore.
“I have it during active flares, the severity changes depending on the severity of the flare.
“It can definitely affect movement if it’s really bad around my knees and it makes it uncomfortable to walk.”
Before her TSW, Ms Cisneros had spent six and a half years working in her dream job as a dental hygienist.
Over the past three years, she has lost her independence, relying on other people’s help to complete ‘basic’ tasks.
Ms Cisneros said: “Imagine being incredibly itchy every single day for years at a time, and every time you scratch you start shedding.
“We [people in the TSW community] are not able to do very basic tasks such as showering or even moving with ease and without pain.
“For the past three years, I have had help from my mum with basic tasks such as combing and washing my hair.
“Relying on her has been awful because I am a very independent person, but beyond that, it makes me feel like a useless nuisance.
“My hands are still affected so my mother helps me wash my hair, as I cannot get shampoo or conditioner on my face or body.
“I am still unable to take a normal shower.
“I sometimes take very careful ‘military showers’ with dead sea salt, I have also taken dead sea salt baths throughout this process.
“I brush my teeth with reusable gloves every single day because my hands are still affected, and I do not want to wet them more than necessary.”
Over the last three years, Ms Cisneros says she has had just two short breaks in which her skin has healed, but most of the time still suffers daily from the agonising symptoms.
She said: “I miss basic things such as going grocery shopping or eating out with family and friends.
“My mum currently does my grocery shopping due to the severe flare I am currently in and I rarely leave my house.
“I miss working as a dental hygienist but it is not something I can return to at this time.
“I miss exercise so much, which is currently not possible due to wounds throughout my body.”
Despite the struggles she faces, Ms Cisneros is now making it her mission to raise awareness of TSW with the hopes of helping others who may be suffering.
She is also remaining optimistic for the future and hopes that in time her skin will start to heal itself.
Ms Cisneros added: “It is important to share my story because this condition is 100% preventable.
“Our [TSW] community wants to prevent other people from suffering the way we have.
“I’ve learned that without health, we don’t have anything.
“I won’t take little things for granted.
“And I’ve also been reminded of the importance of family; friends can come and go but my family will never leave my side.
“This experience also made me even more compassionate.
“Being kind is so important because you don’t know what kind of hardships people are experiencing or they are struggling to continue living.
“I know my future will be much better because I am going to be a lot happier than I would have been without this experience.
“It will be impossible to take things for granted.”
